[stella7]

My husband began having seizures in 1999 at the age of 29 for no know reason--- grand mals for a few weeks, then partial complex ones thereafter. EEG showed activity after the 1st grand mal. MRI's showed nothing. We tried many medications, but he always had break through seizures. He then over the next 10 years developed a host of other symptoms--bladder issues, vision changes, balance problems, depression, air hunger, rash, light and noise sensitivity -- 22 symptoms in all and the seizures continued.--- we travelled from doctor to doctor at the best hospitals in New York City--no one could figure out what was wrong. In 2011 he was diagnosed with late stage Lyme disease, Bartonella, Babesia and Brucella. He did a year and a half of various antibiotics, oral as well as intravenous, prescribed by an excellent Lyme literate doctor in upstate NY. He also has been on a regime of supplements, herbs etc, again prescribed by the Lyme doctor was well as 2 others that gave 2nd opinions. He also uses a Rife machine, which has been a big help-- I'm not going to explain what a Rife machine is to those who don't know what it is--its too complicated for this post.

My husband is now very very much better--- most of the 22 symptoms are gone, but the seizures, although different, continue. The doctors believe that Bartonella is still active and is causing the seizures. I'm not so sure. The seizures are tonic in nature, mainly now at night-- his limbs get very stiff, sometimes he is half conscience and wacks the bed with his legs and arms. He also hums rhythmically and grimaces. I give him liquid Ativan spray in to his mouth to stop them. Mostly doesn't remember them in the morning.

I am looking to see if any there is anyone with a similar problem.

x Stella7

[Darlene]

Stella,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Sad to hear what he is going through. Here is a forum you need to check into, there you will find some assistance. I myself have had epilepsy for 40 years.

Epilepsy:
http://neurotalk.psychcentral.com/forum11.html

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[jgerew]

Stella,

I was wondering if you could assist me with the doctor in upstate NY that was able to help you. I live in Webster NY which is near Rochester NY and my wife suffers from epilepsy. She has focal seizures at night while she is asleep. If left uncontrolled (unmedicated) the seizures have progressed to grand mal seizures.

When she was younger she was bitten by 2 ticks on separate occasions. She developed Lyme Disease but was left undiagnosed and untreated for a couple of years. During that time the seizures also began. She does not have a family history of epilepsy but after her treatment for Lyme (in CA) she still has the seizures.

I have done some online research on Lyme and Bartonella and feel this is an area that hasn't been fully explored in her treatment. Her current neurologist believes that because she no longer has other symptoms that Lyme is no longer present and is not likely the cause but we have not seen a Lyme specialist here in NY.

Thank you for any insights or information that you feel comfortable providing.

[Darlene]

jgerew,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place. I see you have found the PT forum which is the forum where you will assistances with your questions.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[stella7]

Hi,

Sorry I didn't see your post until now. The good doctors in the NY area are Richard Horowitz (Hyde Park), Daniel Camron (Mt. Kisco), Kenneth Bock (Red Hook) and Stephen Bock (near Hyde Park) . How is your daughter doing? There is a video posted on Youtube by a woman having Bartonella seizures that are like mild versions of my husband's seizures. If you go to youtube and search Bartonella and seizures you'll find it. My husbands' seizures last a long time like hers.

All I can say is that you should follow your instincts-- my husband was misdiagnosed for 10+ years by the top doctors in New Your City. The only reason he isn't now dead is because of me and the fact that I stopped listening to doctors. Doctors are limited to what they have been taught and never want to admit they are wrong.




Stella,

I was wondering if you could assist me with the doctor in upstate NY that was able to help you. I live in Webster NY which is near Rochester NY and my wife suffers from epilepsy. She has focal seizures at night while she is asleep. If left uncontrolled (unmedicated) the seizures have progressed to grand mal seizures.

When she was younger she was bitten by 2 ticks on separate occasions. She developed Lyme Disease but was left undiagnosed and untreated for a couple of years. During that time the seizures also began. She does not have a family history of epilepsy but after her treatment for Lyme (in CA) she still has the seizures.

I have done some online research on Lyme and Bartonella and feel this is an area that hasn't been fully explored in her treatment. Her current neurologist believes that because she no longer has other symptoms that Lyme is no longer present and is not likely the cause but we have not seen a Lyme specialist here in NY.

Thank you for any insights or information that you feel comfortable providing.[/QUOTE]

[Kitt]

Welcome stella7.